Saturday, November 15, 2008

Birth and death (by Suzie)

        I turn 50 today, and it feels like a personal accomplishment.
        By now, my friends have learned that you don’t give black-bordered birthday cards that make fun of aging to someone with incurable cancer. (I mention cancer, not to win sympathy, but to make visible the lives of people like me. It’s a part of the disability-rights movement.)
        Anyway, I’m in remission, happily munching on the popcorn covered in toffee and dark chocolate that my sister sent me. (It’s what’s for dinner.) I don’t need anything else, but if you’re so inclined, here’s what I’d like:
        Please tell someone that support exists for people with rare cancers. I don’t know how you’ll work this into a conversation, but I trust your ingenuity.
        Pink was everywhere last month for National Breast Cancer Awareness Month. For the record, I oppose breast cancer. But I bet most people have heard about breast cancer by now, and they know that organizations exist to fight the disease and help the patients. On the other hand, even some sarcoma doctors don’t know that nonprofits exist to help sarcoma patients. The other day, a woman found me by “Googling, somewhat pathetically and furtively, ‘Leiomyosarcoma hope.’ ”
        People with rare cancers often can’t meet in person for support groups, but we can connect by telephone and/or email. The Sarcoma Alliance has a peer-to-peer program to make these connections, as does the M.D. Anderson Network and other nonprofits.
        There’s a scientific explanation why some of us live longer than others. In cases where we don’t have answers, it’s tempting to suggest that people survive because they fight harder or they have a positive attitude or they have a reason to live. Avoid that temptation. As a volunteer, I’ve seen real fighters who kept positive and did much for others die. This week, it was my friend Suzanne Kurtz, who founded Leiomyosarcoma Direct Research. She celebrated her 60th birthday and then declined into death.
        For whatever reason I’m still here, I may as well enjoy the chocolatey popcorn.
       ETA: This story explains what I was doing in Ecuador last week. I know the father of a child who died of sarcoma, and he started a foundation to help kids with cancer in Ecuador.